Bone Mets Thread
Comments
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I agree with so many of the things already mentioned - so many little things that express that you care and are there for them can mean so much - a card, asking how you are, etc. I also agree with doing or offering to do something specific rather than saying, "Let me know if there is anything I can do." I probably wouldn't take them up on that in most cases, unless it was a really good friend, because I'd feel like I was imposing. I haven't needed much help yet this time around, but I remember what it was like when I had early stage BC - I appreciated when someone brought a meal or something, but wouldn't have called and asked someone to do something for me.
One thing I'd like to add to the things Not to say - there are a couple of good friends that I meet for lunch every so often, and almost every time, one of them, who recently turned 60, will make comments about how much she hated turning 60 and how she hates getting old. I'm 53, and am tempted sometimes to say, "I hope to make it to 60 and would love getting old!" - I haven't though because I know she just wasn't thinking of my situation and would feel badly if I did.
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I often wonder the same thing, Roses. It's hard to remember, or even know, who is religious and who isn't, but I figure offering prayers is akin to sending positive energy and hopefully will be taken as a show of caring and support. I'd be interested in hearing how Caryn (and maybe others) feel about that too.
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rosestoeses,
Well, if people start invoking prayers that are not part of my religion, I tell them what my religion is. Most of the time, this tones things down, however, it occasionally makes them believe that this is an opportunity to try to convert me. I don't mind general prayers, as I belong to a monotheistic religion. But, I can do without someone else's specific religion or the implication that I am lost or need to be saved. Saved from what?
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I hope it's okay to intertwine topics, since this is a general bone mets thread, but I have a question - I had my Zometa treatment today. Back when I had my very first treatment, I had some bone pain, and occasionally since then, a headache or some mild overall achiness, but this time, it's mostly just in my right foot, especially my toes! It doesn't feel really painful, like a break or anything, more like when you've done a lot of walking in shoes that are too tight. Massaging it seems to help some, but I've never had it in just the one spot before - and wondered if anyone else had a had anything similar. I'm also taking Arimidex, so maybe it's more like neuropathy or something, but it seems like since it just started after my treatment today, that it might be from that. Any thoughts or similar experiences?
Thanks, Amy
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AmyJM & Rosie-
I personally do not have a Christian belief system and when people offer prayers I believe it is coming from a good place. I offer "good intentions" and "positive energy" to people and hope they receive it well. It can be translated into a "prayer" if that is what makes sense to them.
I had a lady not to long ago want to meet with me (I've never met her, she's a friend of my moms) and pray over me. That was a little much. I know it was coming from a good place. I live right in the Bible Belt and have to be careful how I say things. I have absolutely no issues with people being Christian and I know prayer works. I just "pray" differently. The intent behind it is the same. Just my 2 cents.. 8)
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First: macy, do you take an antidepressant or any anti anxiety meds? I was very fearful when first diagnosed and visibly trembled. In time, with a doctor's help, I was able to find the right anti anxiety medicine to take that fearful edge off so that I could cope on a daily basis. It helped immensely. I still can get a wave of anxiety, but I am able to get busy and it is under control. Your fear is understandable but there are ways to help you cope. For me, that was with medicine.
Regarding religion and those sending us all good intentions and energy our way, I also try receive them in a spirit that I feel the person means well. After I was first diagnosed, a woman I work with had just come back from Rome and had a vial of holy water that had been blessed by the Pope I think. She's a sweet, well-intentioned woman, and wanted to anoint me with this holy water and pray over me and...I let her! It was done privately before school started in a preschool classroom and heck, I thought, how could this hurt? I wouldn't have done this had the woman been something like the fanatic Bible thumping lunatic mother in the movie "Carrie". lol
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RosesToeses,
If I can offer my thoughts on your honest and thoughtful question, I am not religious or a Christian. Most of my colleagues, both my superiors and those I supervise are very religious Christians. I do appreciate when people say they are praying for me because I figure it is good energy being put out and I do feel cared for. I always thank them for the gesture. What is difficult for me is when they respond with "prayer is a powerful tool" or things along those lines because for me that's close to going to a more intrusive, judgmental place. I just say thank you, but it's uncomfortable still. It may seem like a small distinction I know, but I hope it's helpful. Thanks again for asking.
Caryn: thanks for putting your thoughts on the topic out there. The topic is sensitive and often brings out the curmudgeon in me too.
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Amy - great question and yes, that's what this thread is for! I have a lot of pain in the top of my right foot, which got worse after my Zometa infusions. However, I'm told it's arthritis and nothing to do with Zometa. More likely a side effect from Femera plus arthritis.
Thanks for the link, Deanna! I'll look at it in a minute - everything helps.
Macyhen, I totally get what you're saying too. I have "no active bone mets" which is fantastic. But when I get a new ache or pain, it does freak me out a bit. Always wondering if it's back when I'm sore. And despite how optimistic and happy I am much of the time, it's always there. I did a lot of work on "mindfulness" which I'm not very good at, but what little I've figured out how to do has helped quite a bit. I agree - other people don't understand the cold fingers of fear that reach out for you when you hurt and you're not sure why. Prozac has helped me a lot.
Caryn, I'm a practicing Buddhist and don't want to be saved either. Roses - I love that people pray for me. I figure that whatever path you're on is fine, as long as it's working for you. But I don't like people who tell me I have to convert to their "brand" of religion to "get well" or that I kind of deserve to have cancer because I've not been saved, etc. Can't speak for Caryn, however. I also get annoyed with people who tell me that I need to stay positive or I'll "make the cancer worse". I am positive most of the time, but I deserve some pity party days just like everyone else. I just try not to have too many of them.
Mrs.M - I have the best ever "heart in the right place" story. I worked with a born-again Christian and she wrote me a letter explaining to me why I needed to be saved. Her heart was 100% in the right place; she meant to be nice. However, it said (in part), "I know your pain. I used to be just like you - an alcoholic, drug abusing, bar whore, bringing home a different man every night." It would have been insulting if it wasn't so funny and if she had meant it in a mean way. For the record, I'm allergic to alcohol and just throw up if I drink. I have been drug tested for work since 1986 so drugs aren't happening. And I've never had a one night stand (I've tried, but it's never worked out!). She did mean well, but.... I've often thought back to this and marveled at how exciting other people think my life is!
Take care and hugs to all,
Terre
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kiwicat-- if I were up drinking coffee instead of going to bed I would of spewed it all over! How funny is that?! People's perceptions (mine included) can be so interesting. Lol. Thanks for sharing!
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kiwicat,
Oh my, what a letter! You are far kinder than I am to take it so well. Having ones heart in the right place is all good and well but, for me, would not excuse such presumptuous and intrusive behavior. Any attempt to convert others to ones own religious beliefs is a real hot button issue for me, so I'll just leave it at that. And for the record, neither my daughters, granddaughter, extended family nor myself are going to hell because we haven't been baptized.
Caryn
PS: I do apologize for derailing the bone mets thread.
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Caryn, if I don't laugh at things, I'll go screaming into the night. I completely agree with you about people being presumptious; if I had not known this woman as well as I did and known that her heart was in the right place, I would have been livid. It used to be much more of a hot button issue for me; I don't know why I've changed. It still annoys me to the point that I've unfriended some people on Facebook who have felt compelled to save me and change my thinking about various issues.
I feel like I rather derailed the thread as well, so apologies for that!
Take good care,
Terre
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Terre
Your comment reminded me that one of the things I don't like people to tell me is that if I stay positive everything will work out. Like you I am positive most of the time but I DO need the space to work through my fear, frustration,sadness about my cancer sometimes AND it is not true that all you have to do is be positive and the cancer will magically melt away. I think we all know that. I do believe that if you let yourself be negative ALL the time that energy can somehow be self fulfilling and lead to bad things happening but sadly the converse is not true and it takes more than attitude to be cured of cancer.
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Thanks for all the good and honest feedback, I really appreciate it (hmmm...need to stop calling people drug whores and telling them they better enjoy the cancer now because as bad as it is it will be worse in Hell but don't forget to stay positive...(just kidding, I promise I would never!)).
The "positive" trope bothers me as much as the "you're so strong" trope, but like so many things, I know it's usually coming from a place of caring and, honestly, I think unending cancer is one of those things that leaves people without a lot of guidance on what to say. Plus, I'm really awkward a lot of the time so I can probably afford to give other people a pass!
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Terre, that story just cracks me up! A very big 'blooper' and so nice that rather than be offended, you saw the humor in it. I am still laughing.
Regarding religion, I'm accepting of most things unless they are fanatical like the Warren Jeffs type of oppressive religion (FLDS). Myself, I was raised Catholic but am now a non-churchgoing born-again Pentecostal who's attended Baptist, Presbyterian and Methodists services to name just a few and in recent years, I feel a connection towards the Buddist philosophy.
I'm open-minded when it comes to religion, looking at the different ones and saying to myself, 'how does that work? It's the people who try to shove their political views down my throat who are the ones I un-friend on FB.
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Amy - the toe pain could also be neuropathy. I have some in my right toes from the Taxol and it sounds like what you've got.
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I too apologize for my part in the derailing. I have an actual bone mets question for you all- do any of you get regular massages? I had a massage therapist ask if I was cleared for massage. As I type this it occurred to me it may be dependent on the degree of bone mets and pain. I am newly diagnosed with one met to a rib and a chest wall recurrence and do not have pain. It didn't occur to me that it might not be okay. I didn't mention the bone met to the therapist- just the recurrence and she said something about disturbing the lymph system. Of course I will ask my onc but thought I'd put it out to you all too.
Lisa
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Lisa,
I think the concern with massage is with respect to a compromised lymphatic system. There are massage therapists who deal with cancer patients and understand this, but of course, ask your mo.
Caryn
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DivineMrsM.and Terre, I take Zoloft and Klonopin. They have helped me tremendously. But I still have those feelings in the back of my mind. I really want to get to a place where cancer is not part of my outlook on my life. I do have the attitude that I am going to live until I can't anymore, and enjoy to the best of my ability the rest of the time I have here with my Hubby, kids, Grands, extended family and good friends.I am a non church going Christian and believe in the power of Prayer. I also have friends that don't believe and that's ok with me. We agree not to talk religion or the lack there of. I Love them for who they are, not what their beliefs are. To show you that I get along with everybody, my Hubby is a Republican and I'm Democrat and we have been together for almost 40 years!!!
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macyhenlll - My hat is off to you. I am an atheist but I could handle the difference in religion BUT the political thing would never have worked. You are amazing.
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I think all of you are amazing! Macyhen and Mrs.M, you're right - it's more the political thing that makes me "unfriend" people. I was raised Lutheran and looked for a spiritual path after my mother died as the Lutheran thing wasn't working for me. My husband is an atheist and thinks my Buddhist practice is BS. I have dear friends who are born-again Christians. We just don't argue about religion are respect one another's views. I also have friends who are Republican Tea Party members and others who are very liberal Democrats. Again, I just respect their views and know I'm not going to change their minds and they won't change mine. So it's not worth the energy to argue about it.
Macyhen - I went to a cancer counsellor for a while and, frankly, I didn't feel like she helped me a lot at the time. But she did help me steer my thinking a bit and somehow, it all helped me deal with the fear. I still get scared, but it doesn't swamp and overwhelm me like it did before. So in retrospect, I think the counselling did help. The other thing that helped is realising that worrying and living in fear won't change the outcome. Easier said than done, but when I start feeling scared and depressed, I remind myself that making myself miserable won't change the situation.
201-I agree. Being negative all the time isn't helpful and being positive is much better all the way around. I also agree with the "you're so strong" thing. No I'm not. I'm just doing the only thing I know how to do - keep moving forward. But I also know it usually comes from a good place.
Mrs.M - glad I gave you a laugh. It still makes me laugh!
Back to more of a bone mets thing - I've been on Femera for just over a year now and am happy to say that my hot flashes have diminished. I still get them, but not nearly as much as even three months ago. So maybe I'm finally adjusting to it.
Hugs to all,
Terre0 -
Brigadoonbenson, thanks for the hats off. We agreed long ago that our love for each other outweighed the political thing. We agree to disagree about things we don't see eye to eye on and keep it moving. By the way we are complete opposites but it works.
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Caryn, thanks for the input about massage. I don't think I have lymphatic issues but will check.
Terre, it's good to know that your hot flashes are better. I've recently started Femara and I'm hoping mine will ease with time too, especially given how hot it's been here in L.A. Yikes! I truly hope the summer is not a scorcher.
Lisa
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Hi Ladies, I have been on Tykerb for five days and the diarrhea has continued. I am taking an antidiarrheal but need to take like four or five per day and still have diarrhea but not as bad. I have been drinking loads of water and my doctor suggested rice water and that does make me feel better. She said it will help electrolight imbalance. Anyone else on Tykerb that can give me any suggestions. I have a radiology appointment on May 12 and I am hoping that helps the pain. Blessings all
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KarenCanada,
Your post just broke my heart. I'm so sorry you are going through such a horrible time. I have bone mets, but my cancer isn't as aggressive as yours seems to be. It doesn't mean I'm feeling great, but I haven't had to go through such a rapid change. I wish I had more to offer, but I'm pretty new to all this myself. The most I can do is offer you whatever blessings I can conjure up, and plenty of virtual hugs.
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msrockytops,
What an unpleasant se to have! I have no experience with Tykerb but is your diet rich in "binding" foods such as bananas and rice? Hope you get a handle on it soon.
Unfriending people? I have an acquaintance whom I've known for more than 30 years. We were messaging on FB and she mentioned she had no health insurance and had been following Mike Adams (eye roll) for health advice. She then went on to say that she was sure that the reason she was in good health was that she never saw doctors. She surmised that if one saw doctors, they "found" diseases because that is their job. She further wondered, that since I appeared to be doing well, if I should stop seeing doctors so that nothing else would be found! As you can imagine, that was our last convo.
Caryn
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Exbrnxgrl, yes I have been eating bananas, toast, rice, rice milk and crackers. Hopefully my body will adjust soon. Thank you for your reply. Kathy
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I popped in here a while back to introduce myself and tried to keep track of messages, but it seems I lost track. There weren't many posts when I stopped popping in!
Anyway, I wonder if anyone can tell me about the nausea with chemo/cancer. I've had only two treatments and we are waiting a while before the next two. The last chemo was about 4 weeks ago. With the first treatment, the nausea lasted about a week and then I felt almost normal. The pain pills made me tired, but I was otherwise okay.
Now I just feel constantly nauseous. I don't eat anything and smells of food make me feel worse. Is this normal? How long does the nausea from the chemo last?
I was diagnosed earlier this year with Stage IV breast cancer with mets to my neck and shoulder bones.Can anyone shed some light on this for me?
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carol what helped me finally with nausea for over a month was steroids(dexa)that my mo prescribed. That was the only thing that Helped me
Margie
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Carol, does your oncologist know how nauseous you are? It may be different for your situation, but when I had the chemo when I was still stage III, I was nauseous the first dose, but the goal was no nausea and so when the standard set of drugs (lorazapan and several steroids) wasn't enough, they added some stronger things to the mix and that took care of it.
I would give them a call and see what can be done. I was tired, had some neuropathy and bone pain but at least the nausea they could help with.
Wishing you comfort and hoping you feel much better soon!
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Carol, I think you are experiencing very normal things for chemo. Since you're a newbie to the forum, do you know there's a section devoted to chemo? When I started chemo, I went on a thread that had been started for the 'March 2011 chemo' gals. It was the best support I could have received during those months. If you started in April, you could check the thread started for those ladies and join their conversation. That section also has all kinds of other helpful information. Here are a few links:
Breast Cancer Forum: Chemotherapy - Before, During and After
April 2014 chemo thread: https://community.breastcancer.org/forum/69/topic/819587
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